When I was younger I was captivated by dolphins. I loved them, being from Michigan where there are no dolphins, it may have been a bit strange. My friends had pictures of movie stars and rock stars on their walls and I had pictures of dolphins. I had stuffed dolphins, crystal dolphins, all different kinds of dolphins. I loved them. Funny, that something that at one point what may have seemed silly, and pointless, suddenly makes total sense.
My daughter is sick. And she isn’t getting better. She actually, is getting worse. I know it. Her doctors know it. She totally knows it. What was once thought to be a journey that would be long but successful, has become a journey of disappointments, that is scary and filled with constant worry. I remember when all of this started one of her doctors told us, she would be okay, that in high school she would be doing great. Living a normal life. I remember thinking…high school….She’s 4, high school is forever away. I can’t do this until high school. Right now, if that doctor would give me that same assurance, I’d not only take it but I would celebrate. Those promises are long gone.
Faith has allied diseases. One of which is so rare…the only information you find on-line is medical journal stuff, and thats even rare. when your child has an illness like Faith’s there are no statistics….Our doctors are working closely with doctors in China. Who have seen more of her illness than any other country in the world. It’s so scary when your child is sick, its even scarier when you are alone, fighting a disease alone.
So they just keep guessing, albeit educated guessing, but guessing none the less. Our team of doctors has decided to take the least aggressive approach and evaluate its success…unfortunately, to this point its just not working. I am not sure what part of that is the hardest? Her less than 40 pound body has gone thru more surgeries than I can count at this point. If you look at her abdomen, you see a feeding tube, a colostomy bag, a Chait tube, and lots of small scars from numerous incisions that have been made. Tomorrow, they are adding a med Port.
The med Port gives us IV access, which will hopefully keep us home more than we are now. Her home antibiotics are no longer working to keep the infection away. Her colon does not absorb water the way it should so she gets dehydrated very quickly. This port will allow us to give her IV fluids at home as well as continue with IV antibiotic treatment at home. Not to mention the hell that she has to go thru every time she needs an IV will no longer be an issue…no more pokes.
A few weeks from now we will be back for another surgery to remove sections of Faith’s colon. This doctor in China the one who has treated the most cases of this disease says we will have to remove her entire colon. That is a decision that we are not ready make. That decision in my eyes means we have given up on her having a more normal life someday, I am not willing to do that at this point. Removing sections of colon seems like it isn’t that big of deal, but it is. The colon is where your body absorbs its nutrients. The more we take out the less nutrients we absorb. It also means everything gets moved around a different section of colon will be on the outside of her body, more scars, more yuck. I know that when you are talking something that is this serious you shouldn’t be thinking about scars, but I do. She’s my baby. And I hate that she someday will have to explain her scars to everyone.
The other day Faith was watching Dolphin Tale and she says to me, “Mom, They never gave up on Winter til she was fixed, she’s kinda like me.” That dolphin has become our visual source of strength. Staying strong through something like this is so challenging. Your friends change, the people who have stood center stage in your life for years, suddenly drift to the back of the set. I get it, I understand, and its common, they talk to you about it here, all of the frequent flyers as they call us, the people who are strong enough to stand by you float to the top. The others, you have no time to mourn, in fact, sometimes I can go weeks forgetting about people I once cared so much about.
For the most part its not hurtful, because when you are in this kind of pain, a friend that doesn’t care like you thought they might just doesn’t seem like that big of a deal. When you are in this kind of pain, what hurts is telling Faith we are being admitted for the third time this month because her white blood cell count is through the roof, so that nasty infection is back. What hurts is telling Will we are going back in and I don’t know for how long this time. What hurts is on the way to Mott for this admission, I took her to her favorite Thai restaurant, when I was at the counter I turned around to see her with tears rolling down her cheeks as she watched a family that was laughing and having a great time.
We left the restaurant and she was totally silent. When we were just about to pull in to the Mott ER she said, “Mom you’re never going to give up on me right? Because they never gave up on Winter, and she made it. I want to make it too.” I quit making promises I can’t keep with my kids because with this illness I need them to know when I promise something it’s for real. But not giving up on her is a promise I can keep.
So the dolphins, that for some reason I found so beautiful when I was a teenager, suddenly mean the world to me. I look at dolphins and I think of Faith, they are friendly, intelligent, and playful. And the one named Winter, has given my baby hope, in a situation where hope is hard to find. Hope that someday, she will be swimming in the ocean, free of tubes, bags, worry, hospitals, and medicines, just like a child should be. They never gave up on Winter, and I will never ever give up on Faith. I love that dolphin.